FAQ: Managing hepatitis C as a chronic condition

I’ve just been diagnosed with hepatitis C. What’s the prognosis for this?
A lot of new patients come to us with grave concerns that their hepatitis C diagnosis is a death sentence. That’s a common misconception that we’re working to change. If you’re like most of our patients, you’ve been living with hepatitis C for decades — you just didn’t know it until it was discovered in an insurance physical or some other routine exam. When you’ve had the virus that long, your life doesn’t suddenly end the day you find out about it. On the contrary — now that you know about it, you can keep an eye on it, make lifestyle changes if necessary, and consider potentially curative treatment. Patients who stay on top of their condition can live long, full, normal lives.

Now that I know about it, what’s the first step in managing it? Hepatitis C is a virus that infects the liver, so the first step in managing it is to avoid anything else that has the potential to harm the liver. Alcohol is the main threat — people with hepatitis C should abstain completely from drinking alcohol. Certain prescription and non-prescription medications also can be hard on the liver, so review your medications with your doctor. The next step is to decide whether or not to biopsy your liver. A biopsy involves taking out a small sample of liver tissue to look for signs of damage, such as scarring or inflammation. We recommend a biopsy for most patients, with the exception of those who have had hepatitis C for such a short time that liver damage is unlikely. The results of a biopsy can help you and your doctor decide whether you should proceed with treatment for the hepatitis C.

Why would anyone choose not to treat their hepatitis C? The antiviral drugs used to treat hepatitis C are very powerful and can cause significant side effects, so each person should weigh the pros and cons of treatment carefully before moving forward. Side effects can include fatigue, suppressed appetite, difficulty sleeping, suppressed thyroid function, anemia, depression and anxiety. If your liver has been infected with hepatitis C for decades and your biopsy shows that it hasn’t been harmed by the virus yet, then it’s probably safe to assume that it won’t be. In this case, the cons of the treatment may outweigh any potential pros. Most people with hepatitis C fall into this group, experiencing few if any liver problems and living normal lives without treatment. Others opt out of treatment because of other medical or psychological disorders, such as rheumatologic disease or depression, that could be made worse by the drugs used to treat hepatitis C. All told, only about 25 percent of the patients we see complete medical treatment for their hepatitis C.

What is the best treatment for hepatitis C? Currently, the most effective treatment involves a combination of two drugs: pegylated interferon and ribavirin. Pegylated interferon is taken once a week as a self-administered shot. The actual activity of this drug is not very well known, but it appears to stimulate the immune system and to have some antiviral and anti-inflammatory effects that can potentially cure hepatitis C. Ribavirin is a pill that, when taken twice a day, seems to double the cure rate of interferon.

How effective is this treatment? The cure rate depends on the type of hepatitis C a person has. In this country, genotypes 1, 2 and 3 are the most common types. In genotype 1, the combination treatment has a 50 to 60 percent cure rate. In genotypes 2 and 3, it has an 80 to 90 percent cure rate. Here in Oregon and southwest Washington, we have a higher than average proportion of people with genotypes 2 and 3, the so-called “good” types, which respond well to treatment. That means more of our patients have the potential to be cured. Genotypes 2 and 3 are believed to originate in East Asia, so we can thank our Pacific Rim location for our higher cure rates.

How long do you have to take the medications? People with genotype 1 hepatitis C take the medications for 48 weeks — just under a year. People with type 2 or 3 take the medications for 24 weeks.

How do you define “cure”? If the level of virus in a person’s system is undetectable by the time treatment has been completed, we consider that person cured. If the virus remains undetectable six months after treatment, then a relapse is extremely unlikely. In people who are still negative a year and a half after treatment, there have been no reported cases of relapse.

What about the liver — can it recover after a person is cured of hepatitis C? Yes — we’ve found that, by the time a person successfully completes treatment, the amount of scarring in the liver usually has regressed. We measure liver scarring in stages, with four stages between 0 (no scarring) and 4 (cirrhosis/advanced scarring). A patient who successfully completes the interferon/ribavirin treatment typically improves by one or two stages during the course of treatment. Once cure has occurred, the hope is that the liver has the potential to return to completely normal, which we believe may happen in a majority of patients. Even in people with pretty severe cirrhosis, if the medications cure the hepatitis C, our experience shows that the liver scarring improves and the risk of liver failure is reduced.

What if I respond to the treatment, and then have a relapse — can I go back on the treatment? People sometimes do relapse after treatment; usually it’s because we’ve had to reduce their dosages or make other adjustments to their medications to help them tolerate the side effects. Some of these people do go back on the medications, and based on their prior experience, we’re able to be more proactive about managing their side effects the second time around.

What if the treatment doesn’t work for me? If you can’t complete the treatment, or you do complete the treatment but still have the virus, the next step is monitoring until a new treatment comes along that you can try. There are always new treatments on the horizon, so we’re all hoping for something that either is more effective or has fewer side effects. Until then, you should see your gastroenterologist every year or two to keep tabs on your health and make sure no complications arise.

What else can I do to reduce my risk of complications? In addition to regular monitoring, the most important thing you can do, regardless of whether or not you’ve treated your hepatitis C, is to avoid alcohol. Make sure you are not taking any medications that are harmful to your liver. And if you smoke, quit.

What are my chances of developing cirrhosis or other complications? Only about 20 percent of people with hepatitis C develop cirrhosis of the liver, and of those, only about one in four develops complications from cirrhosis. So overall, only about 5 percent of all people with hepatitis C develop cirrhosis complications. Unfortunately, when you consider the millions of people who have hepatitis C, 5 percent is still a lot of people. It’s been estimated that the number of people with cirrhosis and complications will increase by about 600 percent over the next 10 years. That’s not because more people are getting hepatitis C — the incidence of the virus has actually been going down since the United States started screening donor blood in 1992. The reason for the increase in complications now is that cirrhosis generally takes 30 or 40 years to develop (although alcohol use can accelerate it). The millions of Americans who contracted the virus in the ’60s, ’70s and ’80s, before we knew how it was transmitted, are just now starting to develop the complications that take decades to develop. I heard that people with hepatitis C are at greater risk of developing liver cancer.

What is my risk? Liver cancer is one potential complication of cirrhosis. Among the 20 percent of people with hepatitis C who develop cirrhosis, there is about a 20 percent chance that the cirrhosis will lead to cancer. Those who don’t develop cirrhosis are at no higher risk than the general population.

How do you manage cirrhosis and its potential complications?
In terms of monitoring, people who are experiencing complications from hepatitis C should see their primary care provider every two to three months, and their gastroenterologist every four to six months. The primary care provider will reassess symptoms and check lab work. The gastroenterologist will adjust medications and screen for complications. Screenings should include a liver ultrasound twice a year to check for signs of cancer, and an upper endoscopy once a year to monitor for a complication of cirrhosis called varices — enlarged veins in the digestive tract that can cause bleeding. In terms of treatment, the complications may vary widely from one patient to the next, so each person’s management regimen is highly individualized. Providence’s Healthwise Library offers detailed explanations of the various complications of cirrhosis that can arise and the options for treating them. Even if a person develops liver cancer, there are a variety of therapies available to treat it. Catching cancer — or any complication — in its early stages gives treatment the best possible chance for success. That’s why I always emphasize the importance of keeping those screening appointments.

How can I make sure that I don’t spread hepatitis C to other people? One of the questions I hear most often is whether hepatitis C can be spread through sexual contact, and the answer is, it’s not likely — particularly in monogamous relationships. If you’ve been walking around with the virus for 30 years and your spouse hasn’t caught it from you yet, then he or she probably isn’t going to. Hepatitis C appears to be transmitted from person to person only through blood and blood products. Follow common-sense precautions, such as not sharing needles, razors, toothbrushes, nail clippers or anything else that could come in contact with your blood. If you cut yourself, don’t let anyone else apply or remove your bandages.

Any final words of advice? This is your life, and ultimately, you are responsible for keeping track of your health. Remind your doctor to test your labs once or twice a year. If you have cirrhosis, mark your calendar every six months to keep those ultrasound appointments. And if you notice a change in your health, do not hesitate to call your doctor.

Providence Health & Services in Oregon is a not-for-profit Catholic network of hospitals, care centers, health plans, physicians, clinics, home health care and affiliated services guided by a Mission of caring that the Sisters of Providence began in the West nearly 160 years ago.